Chemo starting April 2018
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Hi, GAWarrior,
Dang, I'm sorry about your TNBC, but I'm glad you are still planning to go on your trip. Good for you! I'm also on Taxol for 12 weeks, but with Herceptin added in since I'm Her2+. So far, the only side effects (and this is just my first treatment) are no taste buds (not a big deal), a few aches, and some diarrhea (I'm taking Imodium). I'm drinking tons of water, which I think helps. I'm working from home 25 hours a week, and that seems to be a good decision thus far (and it's only for the duration of chemo). Do you know what type of surgery you will have? Keep in touch, fellow Georgian!
Dee
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Hey Dee (astyanax66),
I am SO relieved to hear you haven't had much trouble. I can handle some diarrhea and no taste buds.
Although, I won't get to the Taxol until about 8-9 weeks from now. I'll do AC first, then T on it's own (or maybe with Carboplatin, depending on how the tumor responds) after that. I hoping the AC is the worst one so I can get it out of the way.I'm not sure about surgery yet, but I'm heavily leaning toward UMX. TNBC is aggressive so I hate to take the chance of leaving cells behind after a lumpectomy, plus I really don't want to do radiation. If you have it once, supposedly you can't have it again and I figured I'd save it for if this comes back sometime down the road and I need it.
It seems like everyone else is doing relatively well, too. Yay! I'm REALLY crossing my fingers I'll be OK, too. If I "only" feel tired and like I'm coming down with a cold, I'll be thrilled. I've been reading these boards since the radiologist first told me my lump was suspicious and now I've become positive that I won't be able to get off the couch during chemo because it will make me non-functional. It doesn't help that I had a friend who passed away of stage 4 metastatic colon cancer two years ago and I saw how devastating chemo was to her body. I have to keep reminding myself that her dose/regimen was much stronger than mine will be.
I read about drinking a ton of water, thanks for the reminder!
Supposedly taking Claritan the day before, day of, plus for 5 days after Neulasta will help prevent bone pain (per the Tips on the chemo boards).
For those on Adriamycin like I will be, sucking on ice chips or popsicles during the infusion helps prevent mouth sores. Biotene mouthwash will soothe and there's a recipe for another soothing mouth rinse in the Tips section.
I also got socks and gloves that hold ice packs - for my hands and feet during chemo (it's supposed to help prevent neuropathy).
Got my wig, cut my hair short! I get my echocardiogram tomorrow. We bumped chemo by one day, to April 20, for the first dose (because we had to bump the biopsy by one day). I'm ready to get started (so I can be done!).
Robin
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Hi, Robin,
I'm also starting AC + T - just like you. I'm waiting for clearance from the plastic surgeon to finalize a date, but it will be either 4/19 or 4/26. I'm hoping that infusions on Thursdays work well for me - I'd like to feel good for at least one of the weekend days. I've cut back to part time, but I plan to work and golf as much as possible throughout all this.
I had my echocardiogram today - that went fine - everything is normal. Port installation is Monday. I'm a bit annoyed because they changed my port installation time from 9am to noon. I was signed up for the American Cancer Society class "Look Good, Feel Better" at 1pm - now I am going to have to wait a month. (Not to mention having to fast from midnight until noon!) Oh, well. It is what it is.
Keep in touch, everyone!
Linda
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Hi Linda,
I'm aiming for a Thursday infusion when I hit the Taxol portion of the schedule, too. Because of my cruise, the oncologist is insisting that I come in for the second round of AC on the first day we're home, which is a Monday. That's going to throw my week completely out of whack, but I'll just deal with it since I'll only have 3 remaining AC's. But I'm going to insist on Thursday for T!
I'm a runner, so I want to be active (like you with golf). They say it helps with the side effects.
I'm sorry you'll miss your Am. Cancer Society class! I'm quickly learning that things change all the time. Today was chaos trying to rearrange everything after they had to bump my MRI-guided biopsy by a day when the MRI machine went down. Rats - I never thought about having to fast for the port placement! I'm not having it done until 2:45pm next Tuesday. I'll never be able to work without eating all day...sigh....
Good luck with your port on Monday!
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I wanted to say a quick note on port placement. I'm very glad I had it done since I have weeny veins. It was the right decision for me. However, it hurt a lot more than I'd expected. I almost didn't ask for anything to takepost op, but I'm glad I did—I had pain and nausea. Luckily, I was pain free within 2 days, but I'd thought it was supposed to be “nothing" and went right back to work the next day. Ouchie! I love my surgeon—she squeezed me into her schedule and did nice work, but I had a funky reaction to anesthesia, I think. So maybe plan to take it easy the day after. I wish I'd known to do that.
And sorry that you have later in the day port placement. That waiting is never fun.
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Hi,
My regimen is exactly the same- first lumpectomy which I had March 12. The then AC and Taxol dose dense. I am not triple neg-but mammoprint scores high for possible reoccurrence .
I am stage 1 ER+ PR-HERS- My first AC treats as yesterday. So far ok- felt like I had the flu- had a headache but nothing unmanageable!! Today I feel really good: Bracing myself for the side effects later from rhe Neulesta shot.
AST- I had my port put in Monday- I feel it was almost worse then the lumpectomy. But it is fine now. They gave me lidocaine cream to use 1 hour before treatment. No pain today.
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ElizB, I agree--I felt much more pain from the port placement than the lumpectomy. The only annoying part of the lumpectomy was the underarm incision for the lymph nodes healed slowly, but it was more "itchy" than painful. I developed a big knotty bruise from one of the locals given during port placement. But things went very well using it for labs and first chemo--so, glad I did it. I didn't feel anything.
I have a question about Neulasta. I was told I may get it or may not--it all depended on how my labs looked each week. Is it inevitable to get it at some point, or are there ways to avoid it? My mom was in a Neupogen trial in the 1990s. Their "big discovery" was to use it sooner than later. (In retrospect, I question their protocol, but that was over 20 years ago).
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The incision under my arm was the most sensitive! You know, I never asked about the Neulesta use. I assumed it was with each treatment...Do we get it with Taxol as well?
Elizabeth
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Hi astyanax66- Last week when I posted that my port placement went well, with little discomfort, I was still under the effects of the surgery pain meds.... holy moly, when they wore off, the pain was crazy. The nurses told me i would only need tylenol, but I ended up using some of my left over pain pills from my lumpectomy. I wondered if the extra pain was due to already having a round of chemo and neulasta? but it's been a week and it is feeling better. I will say though that the pain from the placement is worth it. I worried throughout the week that something was wrong with the port, or that it hadn't healed properly etc, but was reassured that everything looked good when I went for my treatment. I did ask for a prescription for the numbing cream, and put it on an hour before my treatment, and did not feel any pain when they accessed it.
Overall I feel pretty blessed that I had limited side effects after round 1. I was a little tired, and was achy on Neulasta day 2. I had a little bit of tenderness and one canker sore in my mouth (but went away after rinsing). My taste buds are off as well, and I find that even though I feel really hungry, I can only eat small portions, which is ok, I just tend to eat less, but more often. I think this strategy has helped keep the nauseau down as well. My hair is starting to fall out now though, but i'm getting it shaved pretty short tonight to eliminate some of the shedding. My husband made a comment about all the hats I've purchased recently (can't help myself, there are so many to choose from)... and my comment back was "not everyone is lucky enough to wear hats everyday unless they are the queen" so yes, i'm now comparing myself to royalty
and with that Carry On and wishing good thoughts for all of you this week!
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hi and thank you all for your incite, bravery, and sharing. So I had a spot on my mammo screening on 1.25.18...and so it went. Biopsy,, lumpectomy, on 2.14.18 and then a second re excision for clear margins on 3.12.18, surgeon said yes, clear margins, and she removed all cancer. I expected radiation and the hormonal pill , but got the wind knocked out of me yesterday. My ONCOl score is 28, so CHEMO was recommended. I'm 64. Scared to heaven and back. Dr. Said it's low dose, short term. Does anything make it sound better? So I'm having a nine week course of TC 4 infusions one every 3 weeks. I have made an appointment for a wig consultation, don't want to scare my grandsons. Not sure of first appointment date. You know what I AM very concerned about out t, is my teeth. If spent a fortune through the years on them. Does anyone know if I run the risk of losing teeth or if these are affected? I am still in shock at the CHEMO, surgeon did not think I would need it. But I guess I have to do this....thank you all for embracing me into our journey and I. Hope the best for all.
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also.. my mo only told me about having an iv. Nothing about a port as I'm reading here. Does everyone get one? I'm so confused about everything
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Hi Djt,
I'll be 59 next month, so I'm right there with you!
Also, I'm a dental hygienist - chemo shouldn't affect your teeth, however what I always highly recommend to my BC patients is to be sure to ask your dentist for prescription-strength fluoride for when you do your radiation treatments (they may have it on-hand for you to pick up or get them to call in a prescription). Radiation can slow your saliva flow, which can lead to more cavities. Use it daily, starting about a week before rads, then continue to use daily for a few weeks after rads. After that, I'd use it a couple times a week if you find your saliva flow isn't what you used to have, just to be safe.
You might read the tips and tricks that are in the pinned posts at the beginning of the chemo section - I found them very helpful. I don't know much about the meds (I'll get my first dose next week), but I think the Taxol is "easier" than AC (if there is such a thing). If you look at the chemo as insurance against recurrence, maybe that will help?
As for the port - I'm guessing you'll get one because of needing several weeks of chemo, but I don't know for sure. It's hard on your veins to have the chemo infusions, plus the port gives quick/easy access if they have to give you IV fluids or something during treatment.
Hang in there, you've got this!
Robin
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Hi astyanax66, Debsta, and ElizB,
Awwww, rats. I'm sorry to hear that about the port. The docs say they'll place the port like it's as easy as pie. I had no clue I'd be put out for the procedure until this morning when I went to get the paperwork from the surgeon - I though it was a simple incision. Hubby was due to travel for work next week and now has to stay home for this (which I'm happy about, but I would have cluelessly sent him off to the remote work site).
I work all day Wednesday and Thursday and can't get out of it, so I guess I'll just suck it up.
Thanks for the heads up (I think)!
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I think the port is well worth it after having it used yesterday. And the port doesn’t hurt now.
I too went into this being told lumpectomy and chemo. I was soooo thankful. Then post op results came back. and mammoprint result high. It is definitely a punch in the stomach- then the rush to prep for it. But we march through it right!
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Djt, we are on the same treatment - 4 TC every 3 weeks. I dont have a port and I'm ok with that. I had a mastectomy with reconstructive surgery in March so I was fine with no added procedures. The infusion through IV was fine. The first time took longer because they were slowly giving the Taxotere to watch for any adverse reactions. Normally they said it should take an hr to administer. The Cytoxan was only about an hour. We will see how long the next treatment takes.
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Hi Debsta,
Right!? I was like, this will be nothing, but ouch. Still, like you, glad I did it (the port), and the EMLA cream worked well. Sounds like our side effects are also similar, though I’ve not had any Neulasta. Like you, I’m eating frequent small meals and trying to focus on lots of protein. Peanut butter is my friend...I got my head shaved last weekend and think it will make things easier. Next week is when they to expect hair loss.
Hoping all continues to go well for you!
Dee
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Big hugs, DJT! It is all scary and uncertain and unknown. I also went from “just" surgery plus radiation to all that, plus chemo, Herceptin, and 5-10 years of an aromatase inhibitor...in 2 weeks. It was a big shock when the mammoprint came back. Quite Overwhelming. 'm 52.
I'm glad you asked about dental hygiene and that GA Warrior had helpful ideas. I've been blessed with healthy teeth and want to take good care of them, too. I'm using a baking soda toothpaste, a peroxide rinse, and some sort of green gum my dentist gave me for dry mouth, but appreciate any suggestions. I need to get some fluoride, sounds like.
Whether to get a port or not is a good discussion to have with your doctor. I looked at pluses/minuses and realized for me, it would really help. That may not be so for everyone, and yes, it's an extra procedure when one is already pretty darn tired of them. My first infusion went very well with it, but again, it may not be the approach your doctor wants.
Come talk anytime—I'm new on this board and have learned a lot.
Dee
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Hello ladies, just wanted to let you know how this week was for me. I had my first AC treatment on 9th April. It was a pretty ok week, to be honest I was expecting to be a lot worse. No naeusa, I have been taking all my meds. Thursday and Friday were my worst days with pains and aches, the best way I would describe it. I started clarityin on Monday and have taken 1 each day since which i believe helped minimise the effects of the neulasta injection. This doable ladies. Remember drink, drink, drink. Best wishes to you all.
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Robin, you dont dont know how much your response means to me... THANK you, I feel my oncologist did not tell me enough, the port scares me, heck everything scares me. For Instance. Is TC the type of CHEMO the causes permanent hair loss or just temp?. He knows I have occasional heart arrythmya, and I'm not sure if the infusion can affect this or not. , i did read all the tips and wonder what ro bring the first time, the cold feet gloves idea, what can accommodate this and where do i get it? This is a new world to me. I'm trying but terrified.
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Weeeeddie, your post has given me some in site and hope. Thank you. Sounds like you managed well. To hear you say it's do able it means a lot, but you are prob younger than me. What are you doin about hair loss? If u care to share it. ♡♡
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Dee, THANK YOU FOR your kind response! So is a port a surgical procedure separate from an infusion appointment? Completely new to this world and this forum, so glad it's here.
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Djt, you're welcome! Yes, TC is the type of chemo - as far as I understand it T is either Taxol or Taxotere (they prevent cancer cells from dividing) and C is Cytoxan (interferes with cellular metabolism and growth). I got a nifty book from the hospital system where I'm having my procedures - everything about cancer, not that you wanted to know it, lol. The American Cancer Society has great info if you go here: https://www.cancer.org/cancer/breast-cancer.html. Also, they offer phone or in-person support: https://www.cancer.org/treatment/support-programs-...
RE your heart: I had an echo cardiogram done yesterday. They do this before you start chemo so they have your baseline. The tech told me I will see him often during chemo because the oncologist and cardiologists will keep a close watch and adjust the chemo meds if my heart starts to show effects. I have the occasional racing heart, too, which I noted on their health history forms. I would think (hope) your oncologist would order this for you. If he/she doesn't - REQUEST IT! You are your own best advocate and you have to watch out for yourself. Don't be afraid to ask questions or tell them about symptoms that crop up as you go along - and make them explain why they are doing whatever they are doing. That's what you are paying for as part of your treatment! Because I've worked with doctors (dentists) for 30+ years, they don't intimidate me. They put their pants on one leg at a time, same as you. Lol, my oncologist probably already hates to see me coming because I'm on him with all kinds of questions.
RE: the icing for hands/feet - I go to Amazon for a LOT of things and found these socks there: https://www.amazon.com/gp/product/B003L4WOKG. They come with ice packs that fit in little pockets on the bottom and top of the sock.
I got extra ice packs for the bottom of my feet: https://www.amazon.com/gp/product/B00ZVI485Y and here for the tops of the toes: https://www.amazon.com/gp/product/B00ZVIG1R2.
I figure the socks should work just as well for my hands/fingers, so I just got two pairs of the socks and will wear one pair on my hands. I also have read where a few ladies made their own by wearing mittens and socks and just putting frozen bags of peas on their fingers/toes/ under their feet. I have a small cooler that I'll fill with dry ice and the extra ice gel packs because you have to start 15-30 prior to the infusion, switch to new, colder packs every 15-30 minutes throughout the infusion, and then continue switching out for 30 min afterward. With the cooler and extra packs, I'll be able to keep everything as cold as possible.
I know you asked astyabax66 about her hair, but I'll chime in: I cut mine short last week so I could get used to what I looked like. I got a few scarves from Amazon (where else?) at https://www.amazon.com/gp/product/B072372Y82 and got a wig that resembles my new, short cut at a wig shop ($60). There are a bunch of shops around me, hoping there are some by you. If not, Amazon carries them! Also, you can get wigs through the American Cancer Society here: https://www.tlcdirect.org/.. My oncologist told me my hair would fall out about 2 1/2 weeks after the first chemo infusion. I figure I'll shave my head when it starts falling out, then it's scarves and wigs for the summer.
Hang in there,djt - we'll all get through this together! Hugs to all of you, ladies!
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hi Leli, thanks for connecting. My oncologist only said IV, not port, so for a 4 time situation, I hope to not have it, like you. Are you going with a wig, or? Blessings sister. Hope your not getting too ill, stay in touch plz.
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gawarrior, can I just say you are amazing. I don't think I have drawn in a full breath in the past 3 days till now. One of my concerns, silly, maybe.....I'm very close to my 11 year old grandson and he has had a hellish life. I just don't want to scare him with the "C" word. He will guess the minute he sees me not looking like his gram. I have crappy hair any way and did made an appointment with a alternative hair shop nearby. The website seemed cery compassionate a diet looked somewhat affordable, since then fro, read I mg here, I went to the TLCcancer.org site and am encouraged by what they have and the prices.
So, with bringing in all the gear, the hand foot stuff, ice, water, etc, are the nurses tolerant of it? I don't Ok now how this works yet, and my oncologist has said nothing about preliminary as his, dogs, or other prep type things. I hate the surprises they spring. Im a tell l me up front person. I asked 4 ti es would i meed chemo, the answer was NO. Thursday the bad word reared its ugly head, it blew us away. I guess I can. Refuse it, but he says it would bring me from a 28 to about a 14 percent for re occurance.
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Djt - For most people the hair loss is temporary. It also varies from person to person how long it takes to grow back after chemo is over. So try not to think about that too much. Just be prepared that it will happen and try to deal with it as best as you can.
I've gone wig shopping. I have very fine hair so every wig looks like a mop on me :-( I was very frustrated with the whole experience. I bought a wig and I will see how I really feel about it once my hair has fallen out. I live in FL so it is going to be too hot to wear a wig so I had planned on wearing it only when I need to like work, social outings. I am hoping that I am confident enough to just wear the scarves and beanies that I bought - they are more comfortable. I cut my hair short the day before chemo started. I am expecting the hair loss to happen soon.
Today is day 10 after chemo and I actually feel good. I went to the gym this morning and I feel like I have energy. I am eating food and my stomach doesnt hurt. Except for weirdness I feel on my scalp (I'm sure some of it is mental) I feel pretty normal. If it wasnt for the hair loss I would be OK with all of this. But it is what it is...
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Adriamycin is the chemo drug I know of that can be hard on the heart.
Taxotere has a 6-10% permanent hair loss rate.
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Djt, I'm 49 our eldest daughter will 21 on May1st, we are 25 years married July 15th and I am 50 July 25th , what a year, but I'm determined cancer will not define this year, it may be part of it but I'm dammed if I will let it take over. I have got a wig which I intend to wear outside. I haven't touched my hair yet but I noticed it has become limp, so I'm guessing shedding isn't far away. For me the hair loss will be a sign that the chemotherapy is doing it's thing, but I intend to cut before it does shed, some of the wonderful ladies in the March group showed there new hair cuts , which has given me great reassurance.
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Weeeeddie. I am going to try to adapt your motto of cancer not defining the year, we had travel plans and they will be altered, but not ended, I hope. I am now on the 3rd day of learning I need CHEMO, after being assured I did not. I'm disgusted with Myself that I'm still so shaken and anxious. I can barely drink a glass of water, for the stress. I have to adapt to this and move through it. Its hard to get through the night , and then to get up I.n the am. . Did anyone here have this reaction. Maybe ya all are stronger than me, I'm impressed at your strength. When you all post how your feeling and dealing it's so great to read.
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leli, that is amazing you are back to the gym, and sound positive, THANK you for sharing that. I'm a walker, and enjoy outdoor walk in, also on treadmill at gym. I want to continue that, if its about all I can do.
K Susan, thanks for this info, I feel there is a lot of facts not shared at the start of this journey when signing into it. By Drs. Of course, I'm the type that has to know about every little thimg...
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lei, did your team, leave the port decision up to you, or ? Also have you just had the one treatment so far, they probably pick a new vein each TIME!
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